A DOSE OF TOLERANCE

Plenty has been written about teaching children to be more tolerant of their peers with special needs, but what about reaching unsympathetic adults? How to handle those intrusive questions and ignorant comments, whether on the playground or, ahem, at a family gathering.

Let’s say you’re on the playground with your 3-year-old who (hypothetically) has sensory issues. Your child “hits” another kid because that’s just how he rolls these days, and the other kid’s mom freaks out. Mom says something like, “You should be watching your kid!” I’m sure you were, and I’m sure you blinked for like one second to get a piece of fuzz out of your eye or grab a sip of coffee. But now you’re in this vulnerable spot, apologizing and trying to explain his behavior away. “I’m so sorry! He really can’t help it, he’s learning how to navigate his body in space, he’s in OT, he’s also a big bear hugger!”

Another time, a parent might get chatty and ask you where your kid goes to school. Let’s say, hypothetically, that it’s a special needs school. They’ve never heard of it. Then, in autopilot, you launch into the reasons why he’s there and not down the block where her kid goes. “Wow, you’d never be able to tell that something’s wrong!” or, “Oh, I wouldn’t have guessed that just by looking at him!”

“Wow, you’d never be ableto tell that something’swrong [with your child just by looking at him]!”

Welcome aboard: You just hopped on the Special Mom/Typical Mom train right there on the playground. There, and in other spontaneous places and moments, you teeter between advocate and parent.

“It’s a lot of work to be an advocate, and sometimes, like at the playground, you just want to be a parent. Ask yourself what hat you are wearing at any given time. Tiger mom? Advocate? Or, to heck with it, I’m on the playground!” says Sarah Birnbaum, a special needs consultant and special education adviser in New York City. “It’s exhausting when you feel you constantly have to represent your interests, to represent ‘SN’ parenthood, if you will.”

When those little social and conversational collisions happen, it’s perfectly fine to keep it simple—give a one- or two-word answer and move on. This new playground acquaintance isn’t necessarily going to develop into an important and ongoing relationship.

“People take their cues from you. If you hesitate and mumble, their antennas go up. More than 75 percent of people don’t want to know more than the basics, and they won’t pursue it. They don’t want to have to worry about you. If you put a brisk straightforwardness out there, and you don’t cringe and aren’t tentative, people will reflect that back to you. People want to have normal, easy contact,” Birnbaum explains.

“It’s when you look clueless or don’t want to deal with it, like on the playground—that’s when they’re going to give you the business,” she says. “You need a line that you are willing to say with confidence that you can keep in your back pocket.”

Untangling Webs of Feelings

Every parent of a child with special needs needs a “back pocket line”—a simple explanation of your child’s diagnosis or behavior—that’s handy and easy to wield any time.

When it comes to communicating to strangers, friends, and relatives about your child, you need to do what you need to do to take care of yourself. “What this is really about is the parent’s feelings getting hurt. What can you do in those moments when out of the blue you’re blindsided by those feelings?” asks Lisa Speigel, cofounder of the Soho Parenting Group in Manhattan.

Hurt, it does. In those early parenting years I hadn’t processed the shame I felt after having my kid get kicked out of our neighborhood nursery school, and I didn’t know what our future held. I was scared, lonely, overwhelmed, and facing scrutiny from strangers and loved ones about not only my son’s behavior on the playground, but about our new journey into early intervention.

There are the days that you’ll have the energy and emotional stamina to engage these curious strangers; to be the teacher. To describe the special needs program or school your child attends after they say they’ve never heard of it, and to explain why he’s there, to get into his diagnosis. I’ve had plenty of these moments, only without the benefit of having a specific diagnosis. I can remember feeling envious of parents in the SN community who could say, “He has autism” and be instantly understood (in my personal fantasy, anyway).

Instead, I found myself stammering over all of the issues that stacked up to my son needing to be in his particular program. Eventually, I was guided to this line by a social worker, which served me well: “He has a constellation of special needs.” It sounds pretty, doesn’t it? A night sky filled with beautiful constellations that belonged to my son: the sensory thing, the speech thing, the social/emotional development thing. It was such a relief to be able to say that. It was my “back pocket” line.

When a concerned relative, though, mentions, “I can’t see anything wrong with him”—well, what then? For me, those seemingly harmless comments left conversational bruises. But I learned to whip out another talking point that I kept in my back pocket, one that Birnbaum (who’s also a special needs mom) gave me in a support group: “Thank you, he’s been working so hard.” That says two things. It satisfies the call-and-response instinct, and it emphasizes that raising a child with special needs is a process. It’s a short, simple, verbal stop sign.

Another option? Accept your relative’s comment as a compliment—and pause to reflect that the reason it may be challenging for you to do so is because your feelings have been hurt. “Remember that it’s very difficult to become a special needs grandparent, too. They’re going through their own devastating journey,” Birnbaum says. So how do you navigate these emotional waters?

If you think a certain topic or comment is more than a one-off—and that further impromptu questions or unexpected remarks will likely ensue down the road—then set aside time to specifically discuss your family’s challenges with the concerned party, Speigel recommends.

“The ongoing relationships are the toughest,” she says. “These are the grandparents, the family friends. In those seemingly critical moments you’re going to have a mélange of feelings. It’s an internal battle.” Having a deliberate conversation will help you “cultivate a caring relationship,” she says. “And in order to do this you need to take a few minutes to let them know what you need from them.”

Different Day, Different Answer

Years later, I ran into the director of the preschool that booted my kid. I was walking down their block and stopped at a sidewalk fundraiser they were having. She approached me warmly, and then asked, “Did you ever find out what was wrong with him?”

I decided to put on my advocate hat, though I’m sure I did so defensively. I got into the sensory explanation, and said, “You know how he was ‘the hitter’? Well he was the hugger, too, but no one here picked up on that.”

In retrospect I could have said nothing, smiled, and walked away from the hurtful contact, but I didn’t. “The answer lies in what you need to do to take care of yourself in any given situation,” Speigel says. “You need to advocate for your feelings, and for your child. You have enough responsibility.”

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